Luck and Joy

Janey's annual IEP was last week.  For some reason, I was feeling edgy about it.  I don't know why.  It's about the 30th IEP I've been to as a parent, and there wasn't any big issue I needed to address. 

When the meeting was over, I realized what I think had been getting me worked up.  It was the feeling that somehow I SHOULD have something big to insist on or ask for.  And I didn't.  We left the meeting extremely pleased with all we had heard.  We are so lucky.  Everyone there is truly on Janey's team, not just in name but in reality.  They love Janey.  They get a kick out of her.  They see her as an interesting and valued person.  And that is what I've always wanted in those who worked with my children, and it's what I've almost always gotten.

A joyful reunion

One great piece of news from the meeting is that Janey's teacher will have her again next year.  7th and 8th grade at her school works that way, I found out.  I adore Janey's teacher.  She is absolutely wonderful.  I loved hearing her stories about Janey---stories that showed she knows how to encourage Janey to do her best while still respecting her for who she is.  The OT at the meeting was terrific too.  One thing she said that really stuck with me was that she laughs 10 times during a session with Janey.  I love that attitude.  Janey can truly be a lot of fun to be with, if you get her, and the people at her school get her.

It was a very nice weekend last weekend.  Freddy was home all last week from college.  Then, Friday night, as Tony was making dinner, I heard him say "You aren't going to believe this!  I can't believe this!"  I could tell by the sound of his voice that something very unusual had happened.  He sounded shocked---almost scared.  I jumped up and saw, coming through our door, my older son William!  He had flown in from Chicago, where he's a grad student at the University of Chicago, as a total surprise!  He wanted to give us a shock, and he did!  He was here from Friday to Monday, and having all three kids in the house for the weekend---well, that was wonderful.

That night, we ordered takeout, and were all eating it together in the living room.  It struck me something seemed different, a little off.  And then I realized what it was---Janey was just sitting and eating and being part of the crowd.  She wasn't crying, she wasn't making demands, she wasn't needing extra attention.  We were just chowing down as a family like we love to do.  It was one of the first times I remember us all being together in a regular type family activity where she didn't stand out at all.

I wonder often---if someone was viewing us from outside, how would they see things?  I know, in reality, there are still many, many times in an average weekend that Janey gets very upset.  There are almost always times when she screams, or bites her arm, or demands a car ride RIGHT NOW, or so on.  When I look back on a weekend, though, those times sort of get edited out now.  I think we can do that because unlike in the past, they don't last for long.  She gets upset, we deal with it one way or another, she settles down and it's fine.  It's a combination of things.  We learn more all the time about how to best help her, and she learns more all the time about us---that we WILL take her for a ride if she say we will, that if we don't have her preferred food right that moment, we WILL get it in time, that if she isn't getting all our attention right that second, she will get it when it's her turn.

Many people with a child like Janey seem to find the kind of settled peace that we have as she gets older.  I think a lot of it is acceptance.  If I put things in a negative way, I could say it's also giving up on certain things.  We don't feel much sadness or despair over what Janey can't do, most of the time.  She is who she is.  We don't expect her to never get upset, never scream or cry or bite her arm.  We know those times are part of her, just like the times she dances and sings and laughs.

As William was getting ready to go home yesterday, he remarked on Janey.  He said "You know, overall lately she's a joy"  You should have seen her when she saw William at first.  She was overcome with happiness to see her big brother.  At one point, he took her with him to Dunkin Donuts, and he couldn't believe how she waited patiently, how she just enjoyed the experience, being with her brother and getting a treat.  William has been here for all of it.  Hearing him say that---it meant a lot.  Freddy said similar things too.  She is lucky to have the brothers she has, and they are lucky to have her.  And we are lucky to have all three of them.

Good Friday, an IEP meeting and telling Janey a story

Janey had Good Friday off from school.  We never did, growing up in Maine, and it catches me a little by surprise every year.  

Days like that, single days off that aren't federal holidays so Tony has to work, are hard days with Janey.  This year, though, I realized I was dreading the day less than I had in the past.  It's not that Janey has been in a particularly good mood.  There's been a fair amount of screaming and arm biting lately, for causes unknown.  But I don't feel in despair when this happens as often any more.  I think I finally feel confident that if I work at it, I can calm Janey down, at least for a while.  That's a combination of lots of things, I'm sure---her maturing, the school's hard work, Tony and me gradually becoming Janey-trained---lots of stuff.  Whatever it is, I am glad of it.

The day before Good Friday was Janey's IEP meeting.  I've been to a lot of IEP meetings in my life, more than most people, I'd say.  Every time, I leave feeling grateful for all the people on Janey's team.  They seem to get her, to love her, to truly want her to succeed...they are good people.  

For the first time, though, I'm going to have to probably reject a part of the IEP.  At the start of the meeting, as always, I was asked what my particular concerns about Janey are right now.  I said what's been on my mind lately---that I want a full court press to help Janey communicate, to be able to tell us what is on her mind, particularly in the areas of emotions and health.  I want her to be able to express why she gets so upset, and to tell us if she is in pain.  These are not idle wishes, they are possibly life and death things---thinking about Janey's appendix rupture, and thinking about the levels that Janey's furies and tantrums can reach.  The speech therapist, for various reasons, proposed lowering the amount of speech therapy Janey gets.  No matter how I look at it, I can't see this as a good idea.  She said she felt this would give Janey more time in the classroom to learn functional life skills.  But I feel that we can teach her skills at home much more than we can give her speech therapy at home.  So, I said during the meeting that I will be opposed to the lowering of that service, and everyone was very kind and understanding (and although they can't say so, and didn't say so, I think there was some agreement in the room with my feelings)

Keeping Janey happy on Good Friday, I kept with the theme of trying to help her express herself. After one outburst, as I cuddled Janey to calm her down, I told her a little story---an idea prompted at the meeting by everyone telling me how well Janey responds to being read to (which I wish she did at home!)  I said something like "Once there was a girl named Janey.  Sometimes she got VERY angry and screamed a lot, and bit herself.  Her mama and daddy didn't know why she was so angry, because Janey didn't tell them with words.  Her mama and daddy can't see inside Janey's head.  They don't know what she is thinking.  So when she doesn't say words with her mouth, they don't know what's wrong.  The end"

Janey's reaction was---wow.  I didn't expect it.  She looked at me with a look that said "You don't mean it?  You really can't tell what I am thinking?  You don't know?"  Of course right there, I am saying I DID know what she was thinking, and I don't.  I'm not sure that is what she was thinking.  But the look she gave me was quite something.  It was a look of sudden realization.  I wonder if all these years, Janey just assumed I COULD know what she was thinking and feeling.  I don't expect any miracles from her possible realization that I can't.  But it's a message I'm going to keep sending.

I included the part about words being said by mouth as I think perhaps Janey says words in her head a lot, and doesn't realize they aren't audible to me that way.  Often I'll ask her something, and she looks at me like "why are you asking that?"  To her, what she thinks and what she says out loud might seem the same.

There are areas where I am ready to stop trying.  The OT at the meeting said she isn't really any longer trying to get Janey to write.  They are working instead on stamping her name.  I am okay with that.  Janey has never, ever shown the slightest interest in or skill with using writing utensils.  Her IEP doesn't include any work on learning letters.  That is fine too.  I don't think Janey is going to learn to read, at least not in a traditional way, beyond what I think she can already read.  But speech?  I think, or I hope, that Janey will learn to express herself with more ease.  Perhaps I'm wrong.  Janey's speech comes and goes, but in reality, she has never gotten back to her two year old talking level.  But I have to hold onto that hope, and try very hard to figure out how to help Janey tell us what we need to know.

Happy Easter to all of you who celebrate it!

The Big IEP Meeting

I should write about today's IEP meeting while it's fresh in my mind, as it was an important meeting, one that will affect the course of Janey's life and ours for years to come.

There really weren't any big surprises at the meeting.  First we heard from everyone who works with Janey about how she is doing---the regular ed. teacher in her room, the special ed. teacher also in her room, the speech, OT, PT and music therapists, and the ABA instructor and her supervisor.  It's always amazing to me to see what a big and caring and wonderful team Janey has---all thoughtfully relating Janey's progress and non-progress.  Basically, she is making progress, and doing things that she couldn't do in the past---matching objects, sorting objects, taking turns at times, using PECS communication more and more and writing her name with ease (which she will never do at home!)  However, everyone agreed that her moods and her difficult behaviors very much impede her progress.  She often will do something one day, but then refuse to do it again.  On bad days, when she is biting herself and lashing out at others and screaming, it's very hard for her to learn at all.

So, at about the middle of the meeting, there was a big pause, as everyone in the room I think knew what was then going to be said---that Janey needs a new type of classroom.  She needs to be in what is called a substantially separate classroom, and because her current school is an inclusion school, she needs to move.  She will move to a school with a large autism program, a program that has existed for a long time---at least 18 years that I know of, which is an eternity in the world of autism.  It's the school I visited, and I was determined at that time not to want Janey to be in.  I've come around since then, and I do feel it's the right decision to move Janey.  We owe it to her to give her a shot at learning more, and being in an environment made for children with autism.  I was impressed with the ratio of children to adults there, with the kindness and patience of the teachers and therapists and aides, with the progress the kids appeared to be making.  I am hopeful Janey will do well at the school, and once the IEP is signed, we will start transitioning her there.

All that being said, there was a lot of crying at the meeting---not just mine.  The principal sat in on part of the meeting, and tears were in her eyes a lot of the time, as well as in almost everyone else's.  As the principal said, the Henderson School is Janey's home.  It has been for years and years.  She first set foot there when she was 2 weeks old (or earlier, if you count my pregnancy).  I have had a child there for 14 years now.  I love the school.  I truly, truly love it.  But what I love, and what I am comfortable with, is not what is most important.  Janey's needs are.

We will stay in touch with the Henderson.  Janey may still go to after-school there.  We will take her to the spring dance.  We will visit.  And some day, we will bring her back.  The Henderson now is going to be a K-12 school, and at some point, when Janey is ready, it will be her school again.  That is my hope, anyway, and the hope of the staff there.

So, for now, I am going to just try to enjoy these next weeks.  I'm trying hard to stay positive, because I know there is a lot to be positive about.  It's a positive thing to have a whole room full of people working to help Janey, to have a school full of people that love her, and a new school to go to that I do hope will love her too.  We are all hopeful that Janey will be able to progress well at her new school.  But, I do admit, the tears keep sneaking out here and there.  I guess any big change feels scary, and one involving a child like Janey, doubly so.  But we are not going through this alone---we are very lucky to have many others helping us, and I thank all of them for their past, current and future love of my precious girl.

It's not a race

If you have spent much time around little kids around age 4 or 5, you are probably familiar with the stage they go through where everything is a race.  You give a couple of them a glass of milk, and you are sure to hear someone say "I won!  I drank it quicker!"  And you are sure to hear yourself saying that classic line "It's not a race!"

That line was in my mind a lot after our meeting with the developmental pediatrician.  The more I think about the things she said, the less I agree with her.  She first tells me how poorly Janey did on the intelligence tests, which was not the problem.  I expected that.  But then her advice, which is all centered around school---more specifically, feeling that Janey is not making the maximum possible "progress" in her current "placement".  Janey is not learning as quickly or as much as she possibly could.  She grudgingly heard what I said---that I was extremely happy with Janey's school, that I would not consider moving her, that I loved the people who worked with Janey---and then went back to saying basically that she was not getting "all she needed"  Janey should have a one-on-one aide, she felt.  She should be in a separate classroom.  She should be being taught intensely.

And I have been thinking ever since then---WHY?  It's not a race.  We know Janey doesn't learn in a typical way.  She doesn't learn in steady lines.  She learns in an unusual way, and she learns slowly.  Janey is not going to college.  She is not going to get a high school diploma.  She is not going to hold a job.  I am fairly at peace with those facts.  And so why in the world would be it even something I'd consider to move her from a school where she is loved, cared for, taught by people who understand her and are interested in her, where she is surrounded by kids who are kind and compassionate and have grown up with Janey, where people know not just Janey but our whole family?  Why?  So she could show a little steeper rise on some chart of progress?

Janey's IEP meeting was a few days ago, and I left it feeling as I usually do after such meetings---extremely happy.  Teary-eyed at being in a room full of people who love Janey, who get her, who are fascinated by her, who see her clearly---not as a statistic, but as a little girl---an unusual little girl, a little girl with behaviors that can sometimes be very tough to deal with but other times can be incredibly touching.  And people who are giving Janey exactly what she needs---not just in terms of love but also in terms of therapy---speech, OT, PT, music therapy and ABA (which they increased, without me asking).  

I've started a book called "Far From The Tree" by Andrew Solomon.  It's a huge book, and I think I'll be writing about it a lot more.  It's about the relationship between parents and children when the children are very different than the parents, by means of having a disability or other difference.  I love it so far.  One early fact related struck me as relevant to my recent thoughts.  It spoke of how fewer than one in ten professionals (which I am taking to mean psychiatrists, pediatricians, etc, and not teachers or therapists, although they are certainly professional also) found meaning in the struggle to raise children with special needs.  Most of them see it as a tragedy---see the lives as a tragedy.  If that is the case, I can see why they would think that even small improvements in the "outcome" would be worth making drastic changes in the child's life.  I'm sure this is not always the case, but I can see that it sometimes is.  

One gift that having Janey gives us is the gift of time, of not having to rush.  With the boys, there are grades to be completed, tests to take for college, deadlines, must learn now subjects.  With Janey, there is her whole life ahead to learn.  She doesn't need to hurry.  She isn't going anyplace soon.  She will be here, with Tony and me, for a long time.  She can take her time.  She can enjoy her life.  It's not a race.

Reports and questions

I got reports from Janey's 3 specialists today. The speech one was mixed---fairly positive, saying a lot that Janey was talking more in the last few weeks, which is true. But it's hard to measure and quantify her speech issues. They said she talks in an average of 5 word utterances, which is probably true, but those 5 words often make very little sense, or do in such a cryptic way you have to be a mind reader to understand them. They said she is starting to greet known adults by name and with a wave, which is once in a while true, but not consistantly at all. I love the speech therapist, it's not that I don't like what she says, more that it's just so hard to put on paper what is so off about Janey's talking. A good example today was her yelling out "I made a big Itsy bitsy Spider". I turned and saw she had wrapped yarn around her feet and was all tangled up, like a spider web. It's that round about way she often expresses herself. She also wanted her little cloth chair off her crib today, so just kept saying "Everybody sit in their seats" without motioning at all to the chair, I just figured it out by chance. It's like the connection that allow people to say things in a straightfoward way just aren't there.

The OT had a more discouraging report. Basically it said all Janey wants to do at OT is play with shaving cream, and she has little attention span for anything else, shows no pre-writing skills or drawing skills, etc. It made me want to say...put the damn shaving cream away for good, what does she need it for? She's not tactilely defensive, she is FINE with touching anything. I have never met the OT and hear only wonderful things about her, and I'm not trying to put her down, this is just frustration talking.

The PT was very positive and I agree there. I've seen so much progress in that area.

Janey says "I'm stuck" a million times a day. I think it's her description of how her mind feels when she gets upset--like the words are stuck, she's stuck in a feeling she doesn't want to have, a tune is stuck in her head, she is just stuck. Then she usually says "Body help me" (somebody help me). I wish I could do so better.